Enhancement of paediatric oncology pharmacy practices in a low-middle-income country through teaching and training using the My Child Matters Grant.

The development of a successful oncology pharmacy system includes competency training, cost-efficient procurement, proper storage, preparation and administration of chemotherapy, and appropriate waste disposal. Low-middle-income countries such as Pakistan face several challenges within the realm of oncology pharmacy such as the unavailability of training programmes, resources and financial support, and inconsistencies in the safe handling of cytotoxic drugs. The Indus Hospital and Health Network (IHHN) is among the pioneers of oncology pharmacy practices in Pakistan, with a well-established Oncology Pharmacy Team and chemotherapy preparation in accordance with the United States Pharmacopeia 797 and 800 safety guidelines. The My Child Matters Grant was awarded by the Sanofi Espoir Foundation to the Department of Paediatric Hematology and Oncology at IHHN for holistic improvement in childhood cancer care through teaching, training and capacity building. Partnerships were formed with five public-sector paediatric oncology units nationwide. Initiatives were taken to improve oncology pharmacy practices including teaching and training courses, in-person assessment visits, and mentorship and liaison efforts. Despite prevailing challenges, promising improvements were noted at each centre. However, Pakistan needs to establish a national plan for childhood cancer with the creation of regional organisations for the training and monitoring of oncology pharmacists. Centralisation of pharmacy operations within hospitals is essential to maintain the availability, storage, preparation and administration standards of chemotherapy.

Implementation of evidence-based psychosocial care in six pediatric oncology units across Pakistan.

BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great psychological distress and require continuous psychosocial support. Unfortunately, a lack of mental health awareness and trained providers remains a pertinent issue in resource-strained countries such as Pakistan. METHODS: IHHN has a well-established Psychosocial Department for pediatric oncology patients. Mental health counseling, child life, palliative care, bereavement and, social support are provided by a team of trained psychologists and social workers. In an effort to promote the implementation of this psychosocial model, partnerships were formed with public-sector pediatric oncology units and a structured one week online training module was conducted followed by a 1 week hands-on training. RESULTS: Of the total 67 participants registered, 24 were eligible for certificates. The course was open to healthcare workers around the country, considering that dedicated psychosocial personnel are not present in all units. The highest number of participants were from Karachi, accounting for 56.7% and were psychologists, 32.8%. On feedback, all participants said they would recommend this course to others and 80% chose self-motivation as the reason for enrolling compared to 12% who chose workplace requirement and 4% chose certification. Psychosocial workers selected for hands-on training were empowered to implement the POD model at their units and mentorship was continued after the training. CONCLUSION: Establishment of counseling and mental health services must be prioritized and integrated into childhood cancer healthcare delivery. Further studies are needed for establishing psychosocial models in low resource settings.

Infantile T-cell Acute Lymphoblastic Leukaemia: A Case Report.

Introduction: Acute lymphoblastic leukaemia (ALL) is the most common malignancy in children, with a male predominance. Paediatric ALL is usually of B-cell lineage; T-cell leukaemia is uncommon and extremely rare under 1 year of age. Mixed-lineage leukaemia gene rearrangement is the best-known hallmark of infantile leukaemia and is a poor prognostic indicator. While multiagent high-dose chemotherapy remains the first line of treatment for paediatric T-cell lineage ALL (T-ALL), there are numerous side effects of these regimens, and most patients undergo relapse. Due to the rarity of the disease, treatment protocols for infantile T-ALL have not been established to date. Clinical Description: We present a case of a 7-month-old Pakistani male that presented with fever and cough and was subsequently diagnosed with T-cell ALL. T-ALL was diagnosed on flow cytometry. Due to poor prognosis, the patient was assigned palliative care. Practical Implications: Management of infantile leukaemia has yet to be studied in-depth. With a lack of clear treatment guidelines, the approach toward these patients remains challenging. Further research and clinical trials in this area of study are paramount to improving clinical outcomes for these young patients.

Assessing and Implementing Nursing Standards in Pediatric Oncology Units in a Low- to Middle-Income Country.

Oncology nurses are stakeholders in the global fight against childhood cancer. In low- to middle-income countries, the burden of care on nursing staff is high, and nurses face several unique challenges. To optimize pediatric.

Knowledge, attitude and practice of wearing mask in the population presenting to tertiary hospitals in a developing country.

BACKGROUND: In the era of COVID-19 where there is emphasis on the importance of wearing a mask, wearing it rightly is equally important. Therefore, the purpose of this study was to assess the knowledge, attitude and practice of wearing a mask in the general population of a developing country at three major tertiary care hospital. MATERIALS AND METHODS: Participants of this cross-sectional study were patients and attendants at three major tertiary care hospital of Karachi Pakistan. Selected participants, through non-probability convenient sampling technique, were interviewed regarding knowledge, attitude, and practice of wearing mask using an Urdu translated version of a questionnaire used in an earlier study. Three summary scores (0 to 100) were computed to indicate participants' mask wearing practice, technique of putting it on, and technique of taking if off. Collected data were analyzed with the help of IBM SPSS version 19. RESULTS: A total of 370 selected individuals were interviewed, out of which 51.9% were male and mean age was 37.65±11.94 years. For more than 90% of the participants, wearing a face mask was a routine practicing during the pandemic. The mean practice score was 65.69±25.51, score for technique of putting on a face mask was 67.77±23.03, and score of technique of taking off a face mask was 51.01±29.23. Education level of participant tends to have positive relationship with all three scores, while presence of asthma or chronic obstructive pulmonary disease (COPD) as co-morbid had negative impact on mask wearing practice. CONCLUSION: We have observed suboptimal knowledge, attitude and practice of wearing mask among the selected individuals. There is a continued need to spread awareness and educate general population about the importance of using a face mask, as well as the proper technique of wearing and taking off a face mask.

The Michigan Retinal Degeneration Questionnaire: A Patient-Reported Outcome Instrument for Inherited Retinal Degenerations.

PURPOSE: To create a psychometrically validated patient-reported outcome measure for inherited retinal degenerations. DESIGN: Qualitative and quantitative patient-reported outcome (PROs) questionnaire development using item response theory validation. METHODS: One hundred twenty-eight patients with a diagnosis of an inherited retinal degeneration at the Kellogg Eye Center (University of Michigan) were recruited and administered a 166-item questionnaire comprising 7 expert-defined domains. The questionnaire was re-administered 4-16 days later to a subset of 25 participants to assess test-retest variability. Graded response models were fit by Cai's Metropolis-Hastings Robbins-Monro algorithm using the R (version 3.6.3) package mirt. Model data were fit to assess questionnaire dimensionality, to estimate item information, and to score participants. Poorly functioning items were removed, and the model was refit to create the final questionnaire. RESULTS: The psychometrically validated PROs measure was reduced to a 59-item questionnaire measuring 7 unidimesnional domains: central vision, color vision, contrast sensitivity, scotopic function, photopic peripheral vision, mesopic peripheral vision, and photosensitivity. A total of 39 items were removed because of poor factor loading, low item information, poor person-ability differentiation, or high item-level interdependence. This novel questionnaire produces a reliable domain score for person ability that does not show significant test-retest variability across repeated administration. CONCLUSIONS: The final PRO questionnaire, known as the Michigan Retinal Degeneration Questionnaire, is psychometrically validated and available for use in the evaluation of patients with inherited retinal degenerations.

The Michigan Vision-Related Anxiety Questionnaire: A Psychosocial Outcomes Measure for Inherited Retinal Degenerations.

OBJECTIVE: We sought to construct and validate a patient-reported outcome measure for screening and monitoring vision-related anxiety in patients with inherited retinal degenerations. DESIGN: Item-response theory and graded response modeling to quantitatively validate questionnaire items generated from qualitative interviews and patient feedback. METHODS: Patients at the Kellogg Eye Center (University of Michigan, Ann Arbor, Michigan, USA) with a clinical diagnosis of an inherited retinal degeneration (n = 128) participated in an interviewer-administered questionnaire. The questionnaire consisted of 166 items, 26 of which pertained to concepts of "worry" and "anxiety." The subset of vision-related anxiety questions was analyzed by a graded response model using the Cai Metropolis-Hastings Robbins-Monro algorithm in the R software mirt package. Item reduction was performed based on item fit, item information, and item discriminability. To assess test-retest variability, 25 participants completed the questionnaire a second time 4 to 16 days later. RESULTS: The final questionnaire consisted of 14 items divided into 2 unidimensional domains: rod function anxiety and cone function anxiety. The questionnaire exhibited convergent validity with the Patient Health Questionnaire for symptoms of depression and anxiety. This vision-related anxiety questionnaire has high marginal reliability (0.81 for rod-function anxiety, 0.83 for cone-function anxiety) and exhibits minimal test-retest variability (ρ = 0.81 [0.64-0.91] for rod-function anxiety and ρ = 0.83 [0.68-0.92] for cone-function anxiety). CONCLUSIONS: The Michigan Vision-Related Anxiety Questionnaire is a psychometrically validated 14-item patient-reported outcome measure to be used as a psychosocial screening and monitoring tool for patients with inherited retinal degenerations. It can be used in therapeutic clinical trials for measuring the benefit of an investigational therapy on a patient's vision-related anxiety.

Macular vascular density at the superficial capillary plexus using the optical coherence tomography angiography.

PURPOSE: The aim of this study was to assess the effects of age, gender, axial length and retinal thickness on the vascular density in a normal population using the Optovue optical coherence tomography angiography (OCT-A). METHODS: A total of 209 eyes of 209 healthy subjects were scanned using the OCT-A on an outpatient basis. Patients were 20-75 years of age. The built-in software covered a 3×3 mm circle centered at the macula. The circle was divided into five sectors: a 1 mm central foveal circle and an upper, lower, nasal and temporal sector each spanning 1-3 mm away from the central circle. The vascular density (VD) at the superficial capillary plexus was measured, which spanned from the inner limiting membrane to the inner plexiform layer. RESULTS: The fovea was the least dense area (32.5%±5.9%), and the temporal area was the densest (52.4%± 4.4%). Similarly, the fovea was the thinnest part of the retina (237.8±20.7 µm); however, the nasal sector was the thickest (308.5±15.1 µm). We found a correlation of the retinal thickness (r=0.541, P<0.001) with VD only at the fovea. Similarly, males had a greater density at the fovea (P=0.002). All regions significantly and negatively correlated with age even after adjusting for axial length. The age sees a decline in the density after the fifth decade where the variability also seems to increase. CONCLUSION: This study provides normative data for the Pakistani population. Additionally, it demonstrates that VD is affected by the retinal thickness at the fovea and the density begins to decline after the fifth decade.